Just got my biopsy results today

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jeepman
jeepman Member Posts: 109
in Head and Neck Cancer #1
I received my news today that the biopsy was, infact, cancer. Squamos cell carcinoma in a right Lymph node on my neck, unknown primary. My wife and I are speechless. I am in great shape and only 41, we just dont get it. We start my treatment at Chapel Hill, NC cancer hospital on 2 May 2011. I will pray for all of you guys please keep us in your prayers.
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  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #2
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    Prayers Sent
    Jeepman,

    Prayers sent out for you and your wife. One important thing is that you have found a good source for answers to your questions, because there will be someone on this board that has traveled nearly the same road you are about to take.

    Yes, both of you are in a FOG at the moment, you have more questions then answers, but start asking them and we will try to get some answers to you both and hopefully we can calm you a little bit.

    My Best to Both of You and Everyone Here
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #3
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    Jeepman
    As we always seem to say- sorry you are here, but you are most welcome to be here. And you are in my Prayers.

    Unknown primary is what I was, which meant radiation to a lot of areas (20), plus Cisplatin and FU-5. It's not a walk in the park for any of us, but it is very doable. Keep your Drs. informed on how you are physically handling it, so they can help with the meds, etc., and you just may find it's not nearly as bad as you might be thinking, now, that it will be. Everyone is different, Jeepman. The largest thing, in my opinion, is that you are going to survive this thing, as we all do the first round with H&N C, "So get used-to it!"

    Any issues come up that you need help with, or are concerned about- this is a great place for answers. You are stepping into the shoes someone here used to wear, Jeepman, and that person will have the answers you need.

    Prayers

    kcass
  • jeepman
    jeepman Member Posts: 109
    #4
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    MarineE5 said:

    Prayers Sent
    Jeepman,

    Prayers sent out for you and your wife. One important thing is that you have found a good source for answers to your questions, because there will be someone on this board that has traveled nearly the same road you are about to take.

    Yes, both of you are in a FOG at the moment, you have more questions then answers, but start asking them and we will try to get some answers to you both and hopefully we can calm you a little bit.

    My Best to Both of You and Everyone Here

    Thanks for the support
    MarineE5,

    Thanks so much for the support. It really lifts the spirit to see so many others that have beaten the C.
  • DrMary
    DrMary Member Posts: 531 Member
    #5
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    check the tonsils
    You sound like the classic case - we were lucky and the ENT checked Doug's tonsils and then removed one. It was the primary and it was caused by HPV (which he suspected, as Doug is neither a smoker nor a heavy drinker). The good news is that they are very treatable and melt away in the face of radiation and chemo. The bad news is that radiation and chemo are still very tough. If you read enough of the posts here, however, you will see that it is something you can live through. Being young and in good shape helps.

    Welcome, and good luck.
  • jeepman
    jeepman Member Posts: 109
    #6
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    Kent Cass said:

    Jeepman
    As we always seem to say- sorry you are here, but you are most welcome to be here. And you are in my Prayers.

    Unknown primary is what I was, which meant radiation to a lot of areas (20), plus Cisplatin and FU-5. It's not a walk in the park for any of us, but it is very doable. Keep your Drs. informed on how you are physically handling it, so they can help with the meds, etc., and you just may find it's not nearly as bad as you might be thinking, now, that it will be. Everyone is different, Jeepman. The largest thing, in my opinion, is that you are going to survive this thing, as we all do the first round with H&N C, "So get used-to it!"

    Any issues come up that you need help with, or are concerned about- this is a great place for answers. You are stepping into the shoes someone here used to wear, Jeepman, and that person will have the answers you need.

    Prayers

    kcass

    Lot of radiation to lots of areas...
    KCASS,

    Thanks you for the support. This certainly has assisted me in re-prioritizing my life, after just being notified of the C. Time is a valuable commodity, but the love and devotion of a wife/family are too.

    Thanks and god bless.

    Mike
  • jeepman
    jeepman Member Posts: 109
    #7
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    DrMary said:

    check the tonsils
    You sound like the classic case - we were lucky and the ENT checked Doug's tonsils and then removed one. It was the primary and it was caused by HPV (which he suspected, as Doug is neither a smoker nor a heavy drinker). The good news is that they are very treatable and melt away in the face of radiation and chemo. The bad news is that radiation and chemo are still very tough. If you read enough of the posts here, however, you will see that it is something you can live through. Being young and in good shape helps.

    Welcome, and good luck.

    HPV talk
    DrMary,

    Thanks for your words of encouragement. My ENT Dr did metion that he thought it was HPV due to no tobacco, little alcohol. I am looking forward to attacking it back, through some gifted surgeons and oncologists.

    How long did the treatments take? Was Doug able to work or have any kind of a life and if so, during what phases of treatment?

    Thanks,

    Mike
  • bpell0402
    bpell0402 Member Posts: 61
    #8
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    DrMary said:

    check the tonsils
    You sound like the classic case - we were lucky and the ENT checked Doug's tonsils and then removed one. It was the primary and it was caused by HPV (which he suspected, as Doug is neither a smoker nor a heavy drinker). The good news is that they are very treatable and melt away in the face of radiation and chemo. The bad news is that radiation and chemo are still very tough. If you read enough of the posts here, however, you will see that it is something you can live through. Being young and in good shape helps.

    Welcome, and good luck.

    thoughts and prayers with you
    my mom was recently diagnosed. we were told her swollen lymph node was just a branchial cleft cyst. we, like you, were very shocked by the news. My mom was orginally determined unknown primary but a recent tonsillectomy proved otherwise.

    She will begin radiation in a couple of weeks.

    thoughts and prayers are with you as you begin this journey. this is a great resource to find the tools you need to climb the mountain ahead of you. there is much love and support here!
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #9
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    bpell0402 said:

    thoughts and prayers with you
    my mom was recently diagnosed. we were told her swollen lymph node was just a branchial cleft cyst. we, like you, were very shocked by the news. My mom was orginally determined unknown primary but a recent tonsillectomy proved otherwise.

    She will begin radiation in a couple of weeks.

    thoughts and prayers are with you as you begin this journey. this is a great resource to find the tools you need to climb the mountain ahead of you. there is much love and support here!

    Jeepman
    What C&R delivery is he getting? Several different regimes, and sometimes people can work with the less intense, at least for awhile.

    PEG feeding tube, and/or a Port, going to be installed?

    These are a couple of the questions we need answers to, in order to better advise you as to possibilities.

    kcass
  • NW DINO
    NW DINO Member Posts: 31
    #10
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    jeepman said:

    HPV talk
    DrMary,

    Thanks for your words of encouragement. My ENT Dr did metion that he thought it was HPV due to no tobacco, little alcohol. I am looking forward to attacking it back, through some gifted surgeons and oncologists.

    How long did the treatments take? Was Doug able to work or have any kind of a life and if so, during what phases of treatment?

    Thanks,

    Mike

    UNKNOWN PRIMARY
    Mike -

    Stay positive as you can beat this! I had a similar dx September 2010 - SCC HPV 16+ of lump in throat with unkown primary. Was fortunate that a PET scan determined BOT as primary two weeks after initial dx. Good news just recieved a clear PET scan last week after treatment - 7 weeks radiation with Cispatin then Erbritux. Last radiation was December 15th. As you have read everyone's recovery is unique. You should plan on taking off at least one month of work - the radiation takes a lot of your energy & stamina. The toughest part of my treatment was the last couple weeks. I am actually doing great now in a very short time. Saliva & taste buds are all coming back. Focus on taking care off yourself, eating healthy & you can get through the battle!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
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    jeepman said:

    HPV talk
    DrMary,

    Thanks for your words of encouragement. My ENT Dr did metion that he thought it was HPV due to no tobacco, little alcohol. I am looking forward to attacking it back, through some gifted surgeons and oncologists.

    How long did the treatments take? Was Doug able to work or have any kind of a life and if so, during what phases of treatment?

    Thanks,

    Mike

    Welcome
    Sorry you are starting the journey a lot of us have been. But that being said, we have also paved the road and can offer a lot through our experiences.

    Myself, non-smoker, light drinker... January 2009 SCC Primary Tonsils (right) and a lymphnode (secondary) same side. STG III, HPV+. Nine weeks (three week cycles) chemo, Cisplatin, Taxotere, and 5FU (power port installed for the chemo). Then seven weeks of weekly Carboplatin, and 35 daily Amifostine (Ethol) injections just before 15 - 20 minutes of IMRT radiation. Being heavy at 275 and 6'0 going in, I didn't have the PEG and for me this worked out well, for some it can be a life safer.

    I finished up treatment June 2009, it was rough, but doable. All scans have been clean and clear with no evidense of disease.

    Any questions, concerns or fears, post them up...someone, if not many have been there done that and share their experiences with you...

    Thoughts and Prayers,
    John
  • Dav1965
    Dav1965 Member Posts: 132
    #12
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    Jeepman
    Where do you live? I live about an hour away from Chapal Hill. I went to UNC for my cancer. I had stage 4 cancer in my tongue and neck. I saw Dr Hackman for my surgery and he is excellant. I saw Dr Chera for radiation. I can not remeber my chemo dr. If you can get Dr Hackman i highly recomend him. If you have any questons e mail me. Good luck and God bless David
  • mixleader
    mixleader Member Posts: 267 Member
    #13
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    Wishes and Prayers
    Hi, Jeepman. I believe it is a good thing that you found this board so soon. The amount of support and information here is absolutely outstanding. I wish I had found it sooner to help me more when I was in turmoil. I am sure all of us remember the first time we got that announcement of "you have cancer" and our world promptly fell around our ears. All of the human emotions seem to kick into overdrive and a 'lost' feeling threatens to overcome all else. But, as you can read at this site, many people have survived incredible hardships and problems and continue to live good lives. There are many people here who will be wishing you good luck and praying for you throughout this ordeal. Many people here will have experienced similar circumstances and it is very reassuring to talk to people who have "been there, done that". Best of luck on your treatments and please continue to post here to harvest the wealth of information on this site.

    Roger
  • KristynRuth86
    KristynRuth86 Member Posts: 140
    #14
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    mixleader said:

    Wishes and Prayers
    Hi, Jeepman. I believe it is a good thing that you found this board so soon. The amount of support and information here is absolutely outstanding. I wish I had found it sooner to help me more when I was in turmoil. I am sure all of us remember the first time we got that announcement of "you have cancer" and our world promptly fell around our ears. All of the human emotions seem to kick into overdrive and a 'lost' feeling threatens to overcome all else. But, as you can read at this site, many people have survived incredible hardships and problems and continue to live good lives. There are many people here who will be wishing you good luck and praying for you throughout this ordeal. Many people here will have experienced similar circumstances and it is very reassuring to talk to people who have "been there, done that". Best of luck on your treatments and please continue to post here to harvest the wealth of information on this site.

    Roger

    Jeepman!
    I had the same results as you, I was 23 when I had my biopsy and they told me the same thing, Squamous Cell Carcinoma (but it was a left lymph) unknown primary (they never did figure out my primary either). I was baffled as you are, I'm pretty healthy, I'm young, how did this happen?? So I went thru all the treatments chemo and rads and now I'm back on the road truckin along again! Sometimes you gotta take those dark detours to get back to the sunny path. I wish you and your loved ones nothing but strength through your detour.
    Take lots of care,
    Kristyn
  • Ron49
    Ron49 Member Posts: 91
    #15
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    Hey Jeepman
    So sorry to hear
    Hey Jeepman

    So sorry to hear you are going through this difficult time. The one thing Ron and I have hung on to through all of this is "you are young and it is very survivable". It does not diminish what you are going to go through but being young and healthy and having a great support system help trememdously and you will get through it and be fine on the other side. Ron has SCC metastisized to left lymph, no stage given, had surgery to remove 3 cm tumor Jan 3 and his tonsils, subsequent PET, no known primary, tonsils were negative, HPV 16 positive. He just finished his treatment April 1 which was 3 cisplatin 1x every 3 weeks with concurrent rads 33 treatments. The last couple weeks are tough and Ron put in for leave the month of April and we are hopeful he will be able to return in mid May. Please let us know as you go through if you have questions. This discussion board has been a life link for us.

    We will keep you and your wife in Thoughts and Prayers
    Ron & Robyn
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #16
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    lifting prayers
    My husband just received a clean six month post-treatment PET/CT scan for hypopharyngeal and base of tongue cancer, which had metastasized to one lymph node.

    It can be done, jeepman.

    Listen to your oncology team, come here often for the words of wisdom these people have to share, and let us know how things are going.

    Help your wife find the Caregiver section on this site, if she hasn't already. Lots of support there for her, too, and she will need it.

    Hugs to you both.
  • adventurebob
    adventurebob Member Posts: 691
    #17
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    Jeepman
    Hi Jeepman,
    That sucks! Good help here for it though. Being young and in great shape is going to help tremendously. I'm only 39 and tolerated all the treatments quite well and recovered quickly. Diet is huge. Make it the best you can starting today and stick with it all the way out the other side. Exercise too. You'll do fine. I will pray for you and your wife. Be strong.

    Bob
  • scottied
    scottied Member Posts: 34 Member
    #18
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    you may want a second opinion
    I was seeing doctors here in Richmond VA and they could not find the primary tumor. They did a blind biopsy of my tongue tonsils and sinuses and could not find it. One week later I had the same blind biopsy done at Johns Hopkins Hospital in Baltimore and not only did they find the primary in my tongue but also checked for HPV which none of the doctors in Richmond did. My doctor at hopkins told me he deals with 15 to 20 cases of my type of cancer (Squamos cell carcinoma) per month and when i asked my ENT in richmond he said he dealt with it maybe 2 times a year. I feel that my choice in going to Hopkins saved me alot of side effects that i would still be going through had I chosen to stay in richmond and get treated. All doctors are not equal- My problem with some doctors is that they dont always tell you when they dont know what they are talking about or if they have no experience with a particular case.
    Base of the tongue cancer spread to lymphnodes - diagnosed in Sept 2009 - cisplatin and radiation- last treatment xmas eve 2009.Lymhnodes on left side of neck removed April 2010.
    Everythings going great know (knock on wood) gained all weight back, taste back, saliva probably 85% what it used to be and life is good!
  • scottied
    scottied Member Posts: 34 Member
    #19
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    you may want a second opinion
    I was seeing doctors here in Richmond VA and they could not find the primary tumor. They did a blind biopsy of my tongue tonsils and sinuses and could not find it. One week later I had the same blind biopsy done at Johns Hopkins Hospital in Baltimore and not only did they find the primary in my tongue but also checked for HPV which none of the doctors in Richmond did. My doctor at hopkins told me he deals with 15 to 20 cases of my type of cancer (Squamos cell carcinoma) per month and when i asked my ENT in richmond he said he dealt with it maybe 2 times a year. I feel that my choice in going to Hopkins saved me alot of side effects that i would still be going through had I chosen to stay in richmond and get treated. All doctors are not equal- My problem with some doctors is that they dont always tell you when they dont know what they are talking about or if they have no experience with a particular case.
    Base of the tongue cancer spread to lymphnodes - diagnosed in Sept 2009 - cisplatin and radiation- last treatment xmas eve 2009.Lymhnodes on left side of neck removed April 2010.
    Everythings going great know (knock on wood) gained all weight back, taste back, saliva probably 85% what it used to be and life is good!

    ps: im a jeepguy too 1986 cj7
  • jeepman
    jeepman Member Posts: 109
    #20
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    Dav1965 said:

    Jeepman
    Where do you live? I live about an hour away from Chapal Hill. I went to UNC for my cancer. I had stage 4 cancer in my tongue and neck. I saw Dr Hackman for my surgery and he is excellant. I saw Dr Chera for radiation. I can not remeber my chemo dr. If you can get Dr Hackman i highly recomend him. If you have any questons e mail me. Good luck and God bless David

    About an hour from Chapel Hill
    David,

    I am about an hour from Chapel Hill. We live in Sanford, NC. I am a non-smoker (quit 7 years ago) and drink a beer on occasion. My wife and I are still in total shock. It is the one word that changes your life, but you know that. Thanks for the tips with the team of Docs that you had. I will start treatment on 2 May and will ask about the possibility of Dr Hackman, etc. Did you have a neck dissection? I am looking at that, my local ENT doc says. I suppose the docs at Chapel Hill will give me the complete work-up and possible courses of action. What types of side effects can I expect post surgery? Not super scared, but certainly concerned.

    Thanks and god bless you.

    Mike
  • Hondo
    Hondo Member Posts: 6,636 Member
    #21
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    Hi Jeepman
    Sorry to hear the news but hang in there this is just a little set back in life. Keep strong and keep praying.

    God bless and be with you both
    Hondo

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